adventures in family, faith, and Down syndrome

Reflections from Auntie Kelly (on HER birthday!)

by Maggie on January 31, 2015

If there was a perfect person to raise a child with special needs, it would be my sister. Having grown up with my brother and I to drive her batty, she learned patience better than either of us older ones ever did.

Today is her birthday.

She wrote this for the series that I did back when Tessa was born and I never got to publish it. But since it’s her day to shine, I thought today is the perfect day. Her perspective is unique, as she spent some time working with adults with special needs after she graduated from college.

I very truly believe that the vast majority of events in my life have gone much better for me simply because of her presence. It’s a “no BS, occasionally dramatic, wow, no one gets this but you” kind of sister-ship. We make each other crazy most of the time, love each other all of the time, and share a serious obsession with all things chocolate.

When Tessa was born, I was so very thankful that Ellie would have a shot at a relationship like I get to have with my own sister. In the most basic of terms, she is wonderful.

This is the story of Auntie Kelly and Tessa…

As with most life-changing events, on Tessa’s birthday thirteen months ago I woke up with no idea how life was about to change. For me, Tessa’s birthday started as any other day. I woke up, got ready for work, kissed my husband and 4-month-old daughter goodbye and started my day.

Around 10 am, I got a text message from someone – I can’t remember if it was from Maggie or from my mom (aka Mimi) stating that Maggie was in labor. Hooray! I spent the next few hours frantically checking my cell phone. Was the baby here? How far through the process was she? I know the second child always comes a little faster, so what was going on? Why hasn’t anyone answered my texts?

Finally around 1:00, I got a message from Maggie. It’s a beautiful little girl, 6 lbs 14 oz. Labor went quickly in comparison to Ellie’s birth. Doctors and nurses have a few concerns about her, so they’re doing some tests. What do you mean, tests? As soon as I could, I picked up the phone and called Maggie. “What do you mean? Is everything OK?” “They think Tessa has Down syndrome.”

About a million thoughts and feelings rushed through my mind in the next moment, in the next day, week, and months. What do you do with this information? What are you supposed to say? What is my role here?

This is where part of my personal story takes a role. Upon hearing Tessa’s then potential diagnosis, my first solid train of thought went to my first “big girl” job. I first worked at a non-profit agency for adults with developmental disabilities. It is a company that gives people with disabilities a place to call home and a job that is appropriate for their skill level once they age out of the public school system. The company I worked for specializes in programming for adults diagnosed on the autism spectrum, but my experience there was enough to get me thinking about what life could be like for Tessa in the future.

I have worked with a full spectrum of people who had been diagnosed with a disability. I could spend my morning with one young man who you would never guess had been diagnosed that could generally get along fine, but just needed a little guidance with higher-order reasoning and decision making. That same day, I could interact with another man who could only communicate in grunts and by reenacting noises and scenes from his favorite old western and slapstick movies. (“Bang! Bang!” “Get in the car!” “Whoop-whoop-whoop-whoop-whoop!”) I’ve trained staff members to handle situations in which someone has a “behavior” (a term I’ve come to loathe). I’ve been bitten, scratched, hit, belittled, and berated. I’ve even purposefully ran towards someone while they swung metal pipes at my head. I’ve driven the streets searching for runaways, administered medications, I’ve cleaned up an adult’s poop, someone else’s ear-wax… I’ve seen and done a lot of things, things that some people would find terrifying. And it was just another day on the job.

These experiences were the thoughts I had when I heard about Tessa. What would her life be like? What was her future? What happens now?

There really are no words to explain that feeling. Fear? Sadness? Disappointment? Anger? No, not really any of those things. Worry. Maybe that’s more fitting. I have a picture of what Tessa might have to face in her future in my mind, and I worry. I know where the world is, and what we have to overcome. If we as typically functioning adults can’t even treat other typically functioning adults who just happen to have a different color skin than the ones we were given with fairness and truth and faith and love, what can we expect for Tessa? What kind of future will she have? What will this world be to her?

We drove down as soon as we were able that evening. We probably arrived at the hospital around 7, minds racing. We didn’t even think about the fact that babies were not allowed past the waiting room, so focused on our ultimate goal to meet Tessa. John offered to stay and watch Grace while we got to go in and see Maggie and Tessa. I will never forget the look on his face.

Grace was just over four months old at the time. I can probably guess at what John was feeling in that moment. He was exhausted, just mentally and physically tired from the shock of the day’s events. I believe he was probably happy to have a break and to be able to sit and digest his thoughts (practically) alone. And sad. He was so sad. His facial expression made that clear. To look at my daughter and feel that this is what he had hoped for his newborn child. To know that his daughter may not have the future that my daughter would. That was a hard pill to swallow.

I don’t have a lot of experience with other people besides Tessa who were blessed with the 47th chromosome. But my life has been enriched in ways that I could never even fathom by countless other individuals, who just happen to have a developmental disability. I may have experienced all those terrifying sounding things I mentioned before, but was I unhappy? No – believe it or not, that was the best part about my job. At the end of the day I would go home exhausted, but satisfied in knowing that I had helped someone succeed at doing something that I otherwise would have taken for granted. Like roller skate. Or buy a favorite movie online. Or write an email. Or communicate with someone. Or use the bathroom. And if my heart can be opened to loving all those people, people who aren’t family to me, people who I don’t even see anymore… what will Tessa do? How will she turn my life around? She has so much potential in those tiny little fingers, and she doesn’t even know it.

Maybe Tessa won’t be the next President of the United States. Or maybe she will… who knows what her future will hold. Like I said before, if we still haven’t gotten this race thing figured out, I’m not too optimistic about turning around the world for people with disabilities in just one lifetime. (But as a side note, I am optimistic for positive change as we make steps in the right direction with things like the recent passing of ABLE into law.) Whether or not Tessa becomes the President of the United States or the President of the Lay Family household, it doesn’t matter. She matters. Her life matters. The only thing that is truly important is that we make each other happy. That we love one another. All Tessa wants out of life is to love and be loved, just like you and me. And the beautiful thing is, all it takes to make Tessa happy now is to provide her with the basics. A bed to sleep in, some food to eat, a family to love her, and (for now) a shiny mirror to gaze into. How any of us “typically functioning” people can say that about ourselves?

Tessa is one lucky little girl, but we are the ones who are truly blessed. Her life serves as a reminder for us to take a step back and look at what is really important, something we all need to do occasionally. ​I thank God for Tessa. I am blessed to be able to witness her life, and can’t wait to see what she will become. I’m proud to be her aunt!